Understanding Dementia: Information and Support

It is well documented that people with dementia can benefit from activities that engage their minds and allow them to mix with others. Interchange Australia offers both government-funded and private service for people with dementia and their carers including a wide range of engaging activities such as music, art and social support groups that assist people to engage in the local community and take up new hobbies such as cooking, woodwork, sewing; dancing or walking. Interchange Australia also offers a respite service and as my colleague Anne-Marie Kennedy wrote in a recent article, a well designed respite plan can socially engage people with dementia, ensure they retain their community connections and may potentially enable them to remain living at home for longer.

Alzheimer’s Australia provides a lot useful information about dementia to people with dementia and their carers. Their Help Sheets are a wonderful resource and Interchange Australia often uses them in conjunction with our services for both staff and carers. I have compiled some notes from their Help Sheets that may prove interesting to many people living with dementia, caring for a person with dementia or just as some general information sharing.

The cognitive changes experienced by a person with dementia often cause changes in behaviour. A reduction in a person’s capacity to communicate their needs and cope with the environment around them may cause increasing stress for families, carers and all those involved in the person’s wellbeing.

Alzheimer’s Australia states understanding why someone is behaving in a particular way, often helps to better support and care for them. We need to be aware of the fact that the behaviours and communication the person is exhibiting are a result of the changes taking place in their brain. The dementia is the cause of these issues, not the person. Their behaviour is a symptom of their current environmental stimuli often combined with an inability to regulate their emotions and responses. A good example of behaviour change is pain, often undiagnosed. Pain is something we all feel at various times in our lives, but a facet of life that people with dementia often have difficulty communicating to others. Needless to say, this may lead to frustration and challenging behaviours, or, as everyone’s experience of dementia is unique, it may cause no issues at all.

There are some factors that may influence a person’s behaviour such as:

• A lack of meaningful activity or purpose, often combined with not knowing what to do or what they are expected to do;
• Feelings of vulnerability that personal space is being encroached upon;
• Loud, confusing, crowded or hurried environment;
• Vivid memories from the past, often confused as representative of current situations;
• Lowered ability to cope with stress;
• Lethargy due to altered sleep patterns and inadequate sleep; and
• Feelings of aggravation, anguish, loneliness and isolation;

Persons with dementia are not able to learn from consequences so, in order to understand why a person with dementia is behaving in a particular way, it is beneficial to determine what may be triggering the behaviour. This is where family and/or carers may work in partnership to better identify potential triggers and solutions. It is helpful to record these so some alternative strategies for the behaviour may be trialled and options sought. A record should be kept of:

• When does the problem occur?
• What was happening before the problem?
• Who was involved?
• Who was affected?
• What emotion was expressed? eg: anger, fear, frustration.

• What was the response and, did this response work?

As Alzheimer’s Australia states, there are no simple solutions and it is often a process of trial and error, with new strategies developed as needed. If you would like to learn more about the services Interchange Australia offers for people with dementia and their carers, please call 1300 112 334.